What to try next?: Hello everyone, I have been... - Thyroid UK

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What to try next?

t3rcam profile image
17 Replies

Hello everyone, I have been feeling mega lousy for a few weeks now.

I have been taking T3 only for at least a couple of years & doing not too bad. I take 25mcg in the morning, 12.50mcg at lunchtime and 25mcg at teatime. I cannot tolerate T4 in any form. I also take adrenal Cortex - 500mcg in the morning & 250mcg at lunchtime. I recently stopped taking vitamins B & D because I thought I would get my bloods done but it’s not possible at the moment. My basal temps for the last 5 days have been 97,96.8, 96.8, 97,97.

My BP & pulse are a bit odd (I think) - I took these 3 hrs apart after sitting for 20 mins doing nothing.

Mon - 133/77 pulse 85

132/80 pulse 80

139/81 pulse 81

Tues - 135/76 pulse 83

133/77 pulse 85

130/74 pulse 96

Wed - 134/81 pulse 86

143/80 pulse 95

144/80 pulse 97

Thurs - 125/75 pulse 92

131/74 pulse 88

143/73 pulse 96

Fri - 135/77 pulse 86

127/70 pulse 92

132/80 pulse 80

I do feel hypo which is clearly evident by my basal temps. The heavy feeling in my chest & the awareness of fast heart rate is evident.

I am tempted to take more T3 but will this increase my heart rate which is already high? I am 59 this year.

Any thoughts appreciated.

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t3rcam
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17 Replies
SeasideSusie profile image
SeasideSusieRemembering

t3rcam

Why can't you get your blood tests done? There's not much anyone can say without seeing your current results along with their reference ranges. If I were you I'd get a full thyroid/vitamin panel. You don't have to stop taking Vit D, and all you need to stop is a B Complex (or biotin) for 7 days before a test.

As you are taking adrenal cortex, presumably you tested before you started supplementing? Are you monitoring your levels regularly? You should be. Best test is the 24 hour saliva adrenal test which measures both cortisol plus DHEA, this test is offered by Regenerus or Genova Diagnostics. If you continue taking adrenal cortex without monitoring you could send your levels too high.

t3rcam profile image
t3rcam

I can’t get my bloods done because the person taking the blood draw is a nurse & due to the covid situation can’t do it. Yeah, had saliva tests done to confirm adrenal issues. My gut feeling is that I am pooling. Will get blood taken as soon as it is safe to do so.

SeasideSusie profile image
SeasideSusieRemembering in reply to t3rcam

Can't you do a fingerprick test?

When was your last adrenal test? You should be monitoring about every 3-4 months whilst taking an adrenal glandular.

t3rcam profile image
t3rcam in reply to SeasideSusie

As far as I can see a finger prick test doesn’t cover rt3, which I feel is important. I haven’t had a saliva test for a while, I can’t afford to do everything and certainly not 4 times a year i’m afraid. I don’t feel like my adrenals are bad again. My temps don’t show that I am hyper........., mmmm my pulse has never been this high 🤷‍♀️

Will come back when I can get bloods done.

greygoose profile image
greygoose in reply to t3rcam

Testing rT3 is of no importance at all. It doesn't give you any information that you can't get elsewhere. What's more, if you're on T3 only you probably won't have any rT3.

And, there's no such thing as 'pooling'. T3 has a half-life of about 23 hours. It doesn't hang around long enough to pool. What you really need is your FT3 tested. That's the most important number, anyway, and especially so if you're on T3 only. :)

jsy_girl profile image
jsy_girl in reply to greygoose

Hi greygoose I’ve been reading the stop the thyroid madness website which talks about pooling and the reason people sometimes find taking T3 hard being low ferritin or adrenal problems. Started searching on here now about adrenals, but just reading what you’ve said, is this a wild goose chase?

greygoose profile image
greygoose in reply to jsy_girl

Chasing after rT3 and pooling are both wild goose chases. Pooling doesn't even exist. And rT3 is irrelevant. I would not recommend anyone read on STTM - although they are right about ferritin and adrenals.

jsy_girl profile image
jsy_girl in reply to greygoose

Thanks. I am just wondering whether to fork out for a saliva test to see whether that is contributing to my difficulty tolerating t3

greygoose profile image
greygoose in reply to jsy_girl

A 24 hours saliva cortisol test? Might be a good idea, yes.

jsy_girl profile image
jsy_girl in reply to greygoose

Yes. Do you know whether the Dutch test ones are okay for this? I know my functional md person has mentioned this or does a different one work better?

greygoose profile image
greygoose in reply to jsy_girl

I'm afraid I know nothing about the Dutch test, sorry.

SeasideSusie profile image
SeasideSusieRemembering in reply to t3rcam

t3rcam

rT3 is a bit of a red herring. There are many, many reasons why rT3 can be high, only one of which is to do with the thyroid - and that is a build up of unconverted T4. So a test can tell you if your rT3 is high, but not why it's high.

Bugbear123 profile image
Bugbear123

Hi

A high pulse rate is indicative of being hyper. Remember being hyper and hypo often feel similar. You really need blood tests before you decide which you are. My husband who is definitely not hypo often has temperature of 35.7 so I stopped looking at temperature and more at pulse and BP.

Canu profile image
Canu in reply to Bugbear123

What should the pulse and blood pressure be when you're optimised?

SlowDragon profile image
SlowDragonAdministrator

Recommend wearing a Fitbit or equivalent for monitoring resting heart rate

WildDeer profile image
WildDeer

Hello, I'm in a similar situation. I think we may need to take into account that these last weeks , while being ones of quiet lock-down have a context of massive global change and unrest, especially for people losing their work and having loved people ill and dying. Secondly the ambient temperatures, because of global warming swing rapidly and repeatedly from hot to cold in ways they didn't use to.

All of this is going to impact on trying to keep steady on T3 only. If our systems were working normally they would be making very lively wave patterns I think. trying to approximate that, I'm finding I'm falling off the wave quite a lot and having to swim hard to catch up. Best Wishes, Jenny

HLAB35 profile image
HLAB35

What you should do, is as Seaside Susie says, get bloods done. Low vitamin D or iron is a possibility here.

You may benefit from something that'll 'buffer' thyroid hormone. I'm aware that Acetyl Carnitine does this.. It's used by top vets for pets who are hyperthyroid. However, it won't make them hypo, it just works as a kind of valve to prevent excess t3 from entering the cells all at once. Dr Myhill uses it on her CFS / ME patients (who have a tendency to be more hypo) with no adverse effect. I recommend you read some more though and patient reviews first.

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